Wednesday, January 18, 2012

The long, hard journey of a traumatic brain injury.

After recently reading blog posts and comments from the very beginning (right after my accident) and seeing how everyone all pulled together and all cared so much and were so concerned, I felt it important to inform you all on the struggles I continue to face. This is one heck of a long, hard road that lasts a lifetime, not just the 7 weeks (or whatever for others) that you spend in the hospital. Although those are some of the most critical times in your recovery process, that’s only the most critical in your physical recovery. As for the other areas of one’s life, it is a constant struggle and by all means some areas, such as social, the time spent in the hospital is the very, very least critical moments.

So I write today not trying to make anyone feel bad, but rather as an informative and almost more of a documentary of what kinds of things those of us with brain injuries continue to deal with for the rest of our lives. So let’s just go over some of the aspects of one’s life. First we have physical, next we have mental/cognitive, then there’s emotional, and spiritual, but last but by all means not least in the slightest, we have social.

Okay, so physical, I don’t know much about other people’s recovery time, I actually am going to ask one of my brain-injured-friends before I post this but, I’m just going to write what I know. As for me, much of it came back fairly quickly, but by all means, even though I look okay, do not be fooled by the mask. There are many things that I still struggle with, even physically. For a long, long time, my parents didn’t want me to walk the halls of school alone because of my balance issues. And rollerblading is super hard for me now, a lot having to do with balance issues. Obviously there is many issues with fatigue however. For example, I will try to occasionally work out, and I last about 15 minutes before I just about pass out. This however, I do know is very different from my other friend with a tbi (traumatic brain injury). But you see, the reason behind this logic is that he decided that he would get back to exercising the way he used to immediately, whereas I focused all of my energy into cognitive, which also means that where I have excelled there, others have not. But we’ll get to that later. As for another thing that I still deal with, is standing. I know, it sounds crazy, but I honestly, cannot stand in the same spot for longer than 5 minutes. After about 1 and ½ minutes I am feeling restless and if you try to make me stay still for 5, I’m about gone. I don’t know how to describe it, it just kind of feels like the weight of 65 semi-trucks are resting on the backs of my heels, and before long, even sitting in a pile of mud sounds better to me than standing. How much of this comes from fatigue, I don't know. But that's a major issue too. Often times I will just get worn out very quickly, without necessarily doing anything straining. And it's not just physical fatigue, they often talk about things like cognitive fatigue as well. But as for physical fatigue, it has a possibility of coming from lack of sleep. So doctors tell you to get 10-12 hours of sleep every night right after a TBI. Yeah, like that's going to happen! Not. After traumatic brain injuries it is a common problem that many people have. That is to sleep. Getting to sleep is never easy, and staying asleep doesn't happen all that often either. It's also no bueno when you already had terrible insomnia before your TBI (aka me). So sleep's always been a big issue as well. Then, there’s still a couple of other things I should mention in the physical aspects of life. First, let’s talk about bones. Bones like to dissolve, they will look totally smooth one day, and then about a month later, there is a huge divot in some random place where they have replaced some of your bone. It got so bad that I went in for a reconstructive surgery at the end of July in 2011. The repercussions of that surgery are far more than anyone ever imagined. But I’ll mention that later as well. Last thing I should mention here is vision. I hate how one day I went from having 20/20 vision to seconds later, having roughly around 20/80. And sad thing is, that it doesn’t look like it’s ever going to get any better. For various reasons, but unimportant nonetheless. Oh, it looks like that was not the last thing, I was just writing on this page fairly far down and thought of another thing. So I’m not really sure if it’s anxieties or results from the accident, but I get random pains all over, all the time. Things such as headaches, sometimes they get so bad that I have to call into work sick (like today) or they are so bad that we have to rush me to the emergency room at the hospital (which also did happen). Another one of these random pains is in the stomach. There are days where I have no idea what to do but pray that I will either throw up, or have some other terribly disgusting thing happen or just die right then and there because my stomach just aches so bad.

Alright so cognitive, like I mentioned before, I have excelled here in ways that no one else ever has. This is because I focused so hard on my grades before and after the accident alike, and I was not about to let some stupid backhoe get in the way of my straight As. So yes, although I did do extremely well my senior year of high school, it was so far from easy you wouldn’t be able to understand. I went to school after one period was already over, and left school by the time lunch came around. Yes, I was that exhausted. Not only was I hardly ever at school during school hours, but even when I was there, for all anyone else could tell, I wasn’t really there at all. But oh how I was! So I learned that in order to pay attention at all really, it was best for me to just rest my head on my desk, buried within my arms, and only listen with my ears for as much of the lecture as possible. Then, I was constantly (and when I say constantly, I mean 24/7, ask my mom or dad) working on homework. And when I still didn’t get it after hours and hours put in, I would ask my dad for help, and if he couldn’t explain it to me, then I would go to the school either before or after school started and ask my teachers for help. It sure is one heck of a good thing that my teachers were all so good with me. For example, my AP biology teacher, Mr. Louder, would help me make power-points for myself early in the morning, and again after school was over. So thanks to awesome teachers, I got through my senior year of high school. However, then we had my cranial reconstructive surgery, and that was basically the end of my success in school. Trying to go to college about one month after that surgery was practically suicide. So I dropped out. So although I am finally to the point where I can tell you that a fridge goes in the kitchen and that a moose doesn’t say moo, that does not mean that my 5 on AP Calculus exam knowledge has even come close to returning.

As for emotional, this one’s an extremely difficult one. And when you combine all of the other hardships of a traumatic brain injury, it only makes it even worse. So if you’ve ever dealt with such bad depression that you wish every single day that you were dead, I can honestly say I know how that feels. If you’ve ever dealt with such bad anxieties that you are in some sort of anxiety attack (type of thing) for hours on end, I can honestly say I know how you feel. If you have ever wished that you didn’t exist, not just on Earth, but at all, I can honestly say I know exactly how you feel. If you have ever hated yourself so much that you’d be willing to join all the others in abandoning yourself, I can honestly say I know how you feel. And then, the fact that you can’t get away from your stupid annoying self makes you hate everything and their dog, I can honestly say I know exactly how you feel. If you have ever not had the motivation to do what you know is good for you, no matter how easy it may be, I can honestly say that I know exactly how that feels. If you have ever woken up in the morning and just punched the headboard of your bed, I know what that feels like too. If you can honestly say that you can’t reach inside of yourself to make yourself do anything, even just whisper a tiny prayer in your heart, I can honestly say I know exactly how you feel. If you have ever been so angry that you want to kick the entire world like a great big soccer ball, I can say I know how you feel.

But anyway, that’s enough about emotionally, it’s not helping the whole how much I hate myself business. So let’s move onto spiritually. I feel as if I have lost all communication with God. And it makes me so angry, because before the accident, I was in such a good place with God. I never went a morning or a night without saying my prayers and rarely ever a day without reading in the scriptures. But now? No. Now, I feel as if God doesn’t answer any of my prayers anymore. So why pray? If He’s listening, but doesn’t give me the strength to stand for just 5 seconds longer, what’s the point? Especially when it takes more effort than you could ever imagine just to pray, even if not on your knees or even for longer than a minute, if it takes more effort than you even have, why do it if it doesn’t change anything anyway? So have I lost just about everything on the spiritual side of things? Oh yes.

Last, let’s talk about social. All of the doctors in the hospital warned me that I would only have one friend, if I was lucky, after the accident. I didn’t believe them. Not for a second. I proved them wrong in just about everything else, and I had soooo many friends before. I was SO wrong. Friendships have been so rough. The key part of friendship (in high school anyway) is being able to relate and understand with others. After someone has a brain injury, the reason why no one sticks around is because of lack of understanding. Honestly, the only friends that I have now, weren’t really my friends before the accident. Besides adults (aka my beloved bishop) there’s only one person that I even KNEW before the accident. And she knows who she is and she also knows that she is extremely privileged to be considered my friend. As for the others, they’re hard to count because I rarely get to see them. For example, the young man who I’m going to have revise this before I post it, he lives in New Jersey. I live in Utah. Doesn’t make for very good face to face communication. And as for the adults in my life, it’s not the same. Like my bishop for example, I love him to death, he means everything to me, but is he anywhere near the same as having a boy my own age who I could possibly date or something? Not in the slightest.

Just reporting back, I have now had my friend look at it. He said “I believe this is true, cause I know it is.” There was not a single bit above that he thought to not be the case. So, it’s now official, this is the long, hard journey of a traumatic brain injury; in the words of a person who’s been through one and seconded by another.